Getting and becoming an Autistic mentor: a guide for researchers and autistic people

The other day I tweeted, having just had my first mentoring meeting with Kabie. I am an academic, a psychologist, about eight years out from my PhD. Kabie is an autistic advocate, and campaigner. We are both mothers, Scottish residents, and care deeply about getting a better deal for autistic people (and using research to help achieve that).

NB: the bits in italics below are written by Kabie and she and I both approved the whole post.

I’m intrigued – can you tell me a bit more?

Sure! The motivation behind this new working relationship is the firmly held belief, by both parties, that autism research should involve autistic people. And furthermore, that this involvement should be meaningful and representative. A major challenge for me personally, and other academics I know, is how to move beyond a tokenistic or trivial approach. One example of tokenism might be to consult with just one person on the spectrum for every project I do – selecting just the most available individual as a representative of the community. A parallel might be if someone asked me (white, British, married) to consult on a project about the experiences of single mothers from ethnically-Chinese backgrounds, on the basis that I am also a mother.

Another way to “engage” without truly engaging is to ask for comments on a project after all the key decisions have been made, so the autistic advisor is only able to recommend tweaks to the study design or documents, rather than truly influencing the research direction.

I freely admit this used to be how I worked, and I patted myself on the back for being so inclusive and collaborative. But I’m striving now to achieve more meaningful collaborative relationships with community representatives (not always succeeding, but doing my best). This includes trying to involve autistic advisors from the earliest study design stages (normally while writing proposals for funding). I also endeavour to stay abreast of community priorities in other ways – such as on twitter – so that the questions I aim to ask in my research feel aligned with those issues right from the very start.

Seeking an autistic mentor, inspired by a discussion during the wonderful Shaping Autism Research seminar series, is the latest addition to this attempt at effective collaborative working. It occurred to me that I still held all the power, because I would choose when to invite an autistic person to consult on my research and would also have total control over what I showed to them. This power imbalance is a deeply challenging part of any kind of researcher-stakeholder engagement relationship. Asking Kabie to be my mentor is an attempt to change that a bit. The idea is that, over time, she will become intimately acquainted with my work, all my projects, my working style and the constraints that challenge me. I hope she will have a really pervasive influence over what I do.

So how does it work?

When we tweeted about our mentoring plans, there were a lot of questions about how to set-up a relationship like this and so we thought we would put together a rough and ready blog post to help people understand what we’re doing. The piece has been put together quite quickly, so we could get the info out there, so we apologise if it isn’t very polished! But if you want to replicate this model, by linking with a suitable representative of whatever community you connect to through your research, here are some thoughts.

Make friends

This is probably the most important one. In my experience, any relationship, professional or otherwise, works better with an element of friendship. This can’t be forced though – I approached Kabie to ask her to mentor me because we already had a really strong relationship. We had met some years before, collaborated on other projects (notably co-hosting this seminarand writing this grant proposal) and were getting on well.

I remember clearly the first time we had lunch together, how stilted my conversation was. I planned out almost every sentence in advance in my head, to check it sounded OK and wouldn’t contain anything offensive. I was so desperate to make it work. But since then I have become much more relaxed with Kabie. This is partly because I feel more confident in general with talking about autism with autistic people – I’ve done it more and more in recent years and I feel pretty confident that my attitudes are about right, and the words will follow from that. But it is also because I feel that there is some trust between us which means that if I do say something ignorant or prejudiced, Kabie will correct me, but she won’t give up on me.

I was surprised to learn how Sue felt at the lunch as described above; I wouldn’t have expected her to feel nervous or unsure in any way. I think that this is indicative of how she has approached this relationship; even though we’ve only just started the mentoring I can feel that this has a balanced and equal feel to it.

I’ve always found Sue quite easy to be around, I think that’s probably in part because of her understanding that sometimes people do say offensive, ignorant or prejudiced things and what fits into those categories isn’t the same for everyone. I come across many people who really don’t understand this and feel that how they talk about autistic people, however hurtful, it isn’t any of our business. Being initially cautious and accepting that language and ideas that may be common in research circles but maybe aren’t appropriate when talking to an autistic person is important, that comes from a place of respect.

I agree with Sue that getting to a place of friendship is important because the relationship has to be based upon trust and openness, we both have to feel comfortable being honest with each other or there would be little point. I am not a researcher and because of this I may make incorrect assumptions, interpret things differently or find it hard to grasp why things have to be done in a certain way. I think this is useful; not being constrained or limited by ‘the way it’s always done’ or not seeing the obstacles until they’re pointed out to me, coupled with a different way of thinking can hopefully lead to ideas or questions that are useful to both parties.

2. Give full access

This is what sets mentoring apart from just consultation on a specific project. It isn’t instant – our first discussion was just over an hour and we talked about maybe half a dozen projects, some in a bit of detail and some very briefly. I am hoping that with time, Kabie will become really familiar with the work. In the future I’d like to invite her to visit my workplace and sit in on some meetings, and talk to my students and colleagues. I’m looking forward to getting advice where I didn’t know I needed advice.

Learning about the huge amount of work that’s ongoing in some way or another for Sue was quite a surprise and extremely useful. Being able to see everything enables me to create a clearer picture, an understanding of how things fit together. As time goes on this will hopefully mean that I learn more about the world of research from a perspective I wouldn’t usually have a chance to access. Many autistic people are turned off by research, their only experiences being when used as research subjects, an experience that often isn’t satisfying or pleasant – that has been my experience in the past also, maybe if there was more understanding all round this would improve.

Be realistic

One of the challenges, I think, of this connection is that, when Kabie and I have a mentoring meeting, I am doing my job which I am paid to do, and she is volunteering her time*. This means that, at our first meeting, I wrote the agenda. This was basically a list of absolutely every project I have on with some highlighted for discussion – the idea was that Kabie could also pick out things which she felt were particularly interesting, so I didn’t have all the control. The , after the meeting, I wrote the minutes. And right now, I am writing this blog post (which I will send to Kabie for comments and additions before it goes up online). This means I still hold a lot of the power. For the time being, I think the best we can do is recognise this, though I’m happy to hear suggestions…?

Another way in which we have tried to be realistic is by agreeing what we want to do up front. This ranges from adopting a preferred colour scheme for any documents I share (grey background + navy text) to acknowledging that there may be times when Kabie makes a recommendation which I just can’t (or won’t) adopt. Our perspectives are different, our contexts are different. I might like to blame my circumstances – things like funder priorities – for preventing me from following Kabie’s every suggestion. But the truth is that I am part of a scientific establishment which I pretty strongly endorse and respect. I would obviously tweak it if I could, but ultimately I subscribe to things like the value of psychological theory and the need to pass rigorous peer review and I’m not going to adopt any research which bypasses those frameworks. I don’t know if this will ever present a problem – perhaps not – but I think it is crucial to recognise and be honest about the fact that for me, fitting in with established scientific evidence and working practices will always be an essential part of my research.

Being realistic is essential as is knowing our limits. I have the advantage of having connections to lots of others within the autistic community, this means that when I am asked about something that I don’t have knowledge of I can hopefully recommend someone who is more suitable. I like to look outward and include others in everything that I do, as do many other autistic people I know who are active in autistic community working with others and including others reflects the fact that we are all different and have different areas of expertise.

It comes back to be honest and open again, that we both have to accept our limits and not worry about sharing them.

Is it working?

Well, I think it is a bit too early to say. We have only had one meeting, and the next is planned for January (we are going to meet quarterly to begin with). But I guess we’re off to a decent start…

What do you think, Kabie?

I think it will be interesting to see how things progress as we get to know each other better in this context.

The power and control issue is an interesting one and something that at the moment I don’t see in quite the same way as Sue. I think this is because we’re not aware of each persons working styles yet.

The way I see it is that I have difficulty with certain things and having that acknowledged is allowing me control, not taking it away. For example, starting things from nothing is a problem for me, a blank piece of paper will stall me. If someone starts something for me however, that can kickstart me into action. As long as I know that my input will be taken seriously, that I’ll be listened to and am free to make changes I’m happy. Some may see that as extra work but overall it’s a lot less work for me and ultimately those waiting for me to produce something. We all have our foibles, I’m looking forward to finding out what Sues are.

It is too early to say whether this will work long term but I feel optimistic, it feels ‘right’. It’s really good to be doing something practical rather than just focusing on what’s wrong with no answers. I think there’s so much more that could be done to include autistic people in research as equals rather than ‘subjects’ and this is one small thing that will hopefully lead to new ideas and ways of including people to improve quality of research as well as building relationships between the autistic and research communities if more people follow suit.

* NB: this is really problematic and one thing I am working on is securing a consultancy fee for Kabie for this role. Unsurprisingly it is a challenge because I don’t have specific funding for this and there are no sources within my institution. However I have my own consultancy income coming in over the next few months and I hope to be able to redistribute some of this to Kabie in recompense for her time and expertise.